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Discussion Starter · #1 ·
Hello, well I'll start of with that all began 2 months and 28 days ago when I first noticed my swollen finger (from the middle down) which also was painful. Back then (which wasn't too long ago) I didn't do anything about it and then the other fingers became just like that one, but also I noticed that that my fingers are blue from time to time and pale from time to time and really red even and not even equally all fingers.

Then it started on the other hand as well. All the joints of the fingers were painful and most (besides 2) were swollen. Then some weird like spots appeard on then and at the same time I started feeling pretty sick and tired all the time (I wake up at 06:00 and by 11:00 I was already tired and that is just the beginning of the day!). That happened 1 month and 28 days ago.

Next my fingers would feel numb and tingly from time to time and then my wrist and my muscles would ache (1 month and 28 days and I still haven't visited the doctor thinking it will get better). Well the swelling of the fingers started getting better but my knees started hurting SO much and I had a headache every day and a migrain at night. I don't know if the "blush" I have on my cheeks and the bridge of my nose could be called a rash and if it is one it's really mild.

I decided to go to the doctor. She looked at my fingers (I didn't tell her all my symptoms just showed her the fingers). She sent me to a blood test, here it all begins... Now when I went doing the blood test my symptoms were really weaker than 1 month before I went to the doctor (I suppose that if it's Lupus then what I had 1 months ago would be called a "flare-up" and the current state is mostly inactive) so my ANA came negative, my ESR is really low, C3 lower than should be and C4 lower than should be, CRP normal, Albumin Serum a little high, WBC normal, RBC normal, Palatelets normal, TSH low, Free T4 low, don't know if this one's important because I don't really know what it is unlike the rest that I wrote: something called Neutrophils that came higher than should be, Iron low, Vitamin B12 pretty low. Now, those aren't all the tests but those I suppose the important ones. By those tests I understood my doctor suspects an autoimmune disease and in my opinion Lupus.

I looked at the chart of symptoms and I saw what i felt and feel written there but with that blood test the diagnosis ain't going to go somewhere because most of what you usually see with Lupus is fine but once again I started feeling all that 2 months and 28 days ago, maybe it's too early to tell. Today I couldn't run because my knees hurt so much and then they were like a bit tired of the pain they went a little numb and it was hard to walk, I got a weird circle shaped rash (I suppose it's a rash because it's red and it looks like it's drawn under my skin) on my arm and that happened after my TaeKwonDo lesson in which I could barrely do anything because I felt so sick and now I feel so much worse and tired.

Now I wrote all that because I want to hear your opinnion people and maybe sugestions to what I can do to help diagnose Lupus if it is Lupus because I don't want to be going through so many doctors and taking so many time untill they know what's wrong with me. Tomorrow I have an appointment witha Neurologist to whome my doctor (a GP) sent me I suppose because of my numbness and tingling. My finger symptoms are the same still like when I showed them to my doctor a week ago (better than 2 months ago but still you see them blue and pale and with some red spots and swelling and PAIN) but the other joints got worse and the muscle pain got worse. I didn't tell my doctor anything besides showeing her the fingers maybe it's time to tell her all I feel just like I told you people. I am open for anything and any sugestions and ready to listen.
Thank you.
 

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4VE4,

Welcome to the Lupus Site. One thing is for sure something is not right in your body. You are also correct that without a positive ANA it will be difficult for a doctor to diagnose Lupus if that is what is going on. The Neurologist is only going to be concerned with the tingling and numbness but I would still mention your other symptoms to him as he will hopefully note them in the chart notes. I would not expect any kind of a diagnosis from your appointment, you may have additional neurological testing depending on what the doctor decides.

I would wait till the GP gets a report back from the Neurologist before pushing for any kind of diagnosis. At the same time I would let the GP know about the pain and fatigue you are experiencing. Ask if taking Aleve might help at least with the pain part of things. All of this helps to document your symptoms without letting the doctor know you are tying it all together. It is never a good idea to tell a doctor what you think is wrong with you, often after doing this patients are met with a stone wall as far as any further investigation being done.

The fact that your GP has referred you to a Neurologist is a good sign. She can tell that something is wrong, this is something that not all patients get right away. By focusing on her seeing something is wrong you can push for further testing/investigation if the Neuro comes back with anything less than a full diagnosis.

I will share a bit of my story with you. Friday of Labor Day weekend 1988 I woke up in my motel room with a painful right thumb and a numb left wrist. It might have been vice versa I don't remember 20 years later. I went from GP to Neurologist to Rheumatologist. However it was the Neurologist that told me to see a Rheumatologist. I remember the GP saying it wasn't arthritis related because the blood tests came back negative. I don't know what they really said because I don't have copies of that lab test nor do I remember the name of the GP. (another long story). By the time I get to the Rheumatologist it is the middle of December at that time my ana did come back positive with a titer of 1:320. I was initially dx'd with RA then many months later changed to Lupus and in all actuallity I have both plus more.

When someone is first "getting" Lupus the blood tests don't always show right away. It was 3.5 months between my 1st 2 lab tests. My second time around (after a long remission) It was 4 weeks between my 2 lab tests and my ana went from 1:80 to 1:1280 in that time. The bloodwork doesn't need to be taken on your worst day to come back positive for whatever it is going to be positive for.

I suggest patience and a daily record of what symptoms you are experiencing. It is also a good idea to write a record of all your health issues going as far back as you can remember and further if you have family around to give you more information. Don't leave anything out. Something you think couldn't possibly be related could be!

Let us know how things go.

take care,
Karen
 

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Discussion Starter · #3 ·
Hello and thank you. I will keep sort of a diary of the symptoms which is also good because I remember as far as it began and even earlier than that when I thought the pain I felt wasn't connected but maybe it is.

Today in 4 hours and 23 minutes I have an appointment with the neurologist. I will let you know how did it go when I get back. My GP wants to be with me on the appointment so it's good if I tell them both how I feel.

One thingI didn't understand from your story: how many blood tests you had it total? and how much time had passed betwen each test? and how long it took to diagnose you (I mean like did it take a couple of months or even a year)?

4VE4
 

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Dear 4VE4,
Diagnosis can be slow because some cases need time and also Lupus is not diagnosed lightly as it can mess with things like Mortgage and Insurances.
However, it is quite possible to start treatment even before the bloods show anything. (If you have an enlightened Dr.) My bloods showed nothing for years.
x lola
 

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Discussion Starter · #5 ·
My doctor is very inlightened actually :)

I just came back from my neurologist's appointment and my doctor with the neurologist descided what I have must be coming from Auto-immune disease so they are sending me for more blood work and to see a rhematologist.

I asked my doctor what she thinks it might be when we were alone in the room (I am very close to my doctor, she has been my doctor since I was 5 and now I am 16) and she said that something 'systemic' so I asked her could it be Lupus and she told me: "Honestly I don't know, I don't think it's Lupus especially because your blood test but let's hope for the best" so I said: "But first tests could come out negative and you know that" so she said: "Yes I do know and that is why we'll test you again in a couple of months and you should have came when you first noticed something's wrong!" so I said: "I know but I thought it's a minor problem anyway auto-immune problem?" she said: "I don't think it's Lupus but those are my thoughts, I can't tell for sure, here, I'm refering you to a rhematologist and please do me a favour call the place today get an appointment, don't wait untill the world will end because then you won't need me, the rhematologist or the information about your health anymore" so I said: "OK I'll do it, I promise".
Now what my doctor wrote to the rhematologist is all I feel, all she sees and that she suspects Systemic Sclerosis (Scleroderma CREST Syndrome).
Now tomorrow I am going for a CPK and RF blood tests, we'll see what will it show us.
She also wants to send me to do an x-ray of my hands but that will be later.

4VE4.
 

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Hi There

I am glad that they are referring you to a rhemotogist as that is the doctor that can test and follow all autoimmune diseases.

I would aslo say take some pictures of any swelling, redness ect as it may not be present at the time of your visit. This will help show the rhemo or any doctor in the future what was happening.

Good luck with your appointment and definitely make that list for the rhemo !
 

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Discussion Starter · #7 ·
You are right, I will take pictures because it might go away and not be present at the appointment with the rheumatologist just like it got better by the time I went to my GP but got worse again when I went to the Neurologist.

My appointment with the rheumatologist is in 1 month and 18 days so it's enough long time from now. I wish I could have an appointment sooner but that is the soonest. I just feel so weak and general fatigue (I want to sleep 5-6 hours after I get up) all the time. I am an athletic person who does sports and I have competitions also and my joint pain and the muscle pain and the general aching is actually stopping me because I can't do the simplest thing I got 4th place in my city 3 years ago and that is running; my knees just hurt so much :(

Oh well for now I ain't got anything else to say so I will be waiting for my appointment and hope that when I get at last to the rheumatologist he will be able to diagnose me and I hope it will be soon even though the only wrong things in my blood test were: very low ESR, low C3 and C4, low TSH and T4. My RBC and WBC and Platelets are fine and ANA negative and CRP fine, C-ANCA and P-ANCA negative. On Sunday I am going for CPK and RF tests (I am more interested in the result of RF test and well for some reason I assume that it will come negative as well).

Anyway I'll keep you guys posted about the RF and later on about the rheumatologist.

4VE4
 

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Hi 4VE4 and welcome :welcome:

I just wanted to wish you well with your upcoming appt with the Rheumatologist.

The T4 and TSH tests are to do with your thyroid. Have any further investigations been done as to why these tests are low? Thyroid malfunction can cause a whole host of symptoms and make you very unwell.

I hope you get to the bottom of all this soon.

love
Lily
 

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Discussion Starter · #9 ·
No, there was no further investigation about the TSH and T4.
I know that C3 and C4 are Complement and that those being low is a bad sign and can mostly it shows that there really is an autoimmune problem.
I don't know the effect of low ESR and maybe it's not as important as high ESR.

Anyway, in about 3 days I'll post the result of the RF and CPK (isn't CPK is to show whether there might be a heart attack? I wonder why I was sent to do that test, oh well...)

4VE4
 

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:) Hi there, Before your appt, write down all your symptoms
that you have, no matter how big or how small. include anything in your family history that might be of help. List
everything, wether you think it would pertain to you medicaly or not. Then, take a copy of that. The copy you will hand to the dr. and tell him that this is for him to put into your file. the other one you keep,and you begin a journal of sorts. When something new happens, jot it in the journal, and you can re-write it b/4 the next appt. Also, you may want to make a list of questions, make it short, as you may only get to ask about three or,four, so put those at the top. and have a pen so that you can write the answers, cuz you may forget b/4 you get to your car. Keep us posted.:wink2:
 

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Discussion Starter · #11 ·
I am so unlucky sometimes... 2 and a half days ago I cought the flu! (though I have no idea where could I have possibly catch it...) So besides already being unwell I also feel like, well you know what the flu is like, everything hurts even more, tired even more, and real difficulty breathing, so bad that yesterday I couldn't sleep for more than 5 minutes in every half an hour and tonight it's not even 5 minutes because I am litterally gasping for air and I am so tired, I want to sleep so much... Tomorrow I am going to my doctor, I thought to go yesterday but I didn't and I am going tomorrow for sure and at last I'll do my blood tests (the RF and CPK) which I had no time to do with getting sick and all.

halfpintfl: I'll do it, I already started thinking but it's hard when I have the flu because I don't know which symptoms are of what (the flu or the other thing) and with a fever of 39.9 degrees celcius (now thank whoever it got a little down to 38.8 degrees celcius this evening) it's even harder thinking which is from what so I'll just wait untill I am free of the flu. Also, I don't have a car, I am only 16 years 8 months and 18 days old but that's OK I understood what you meant, when I read that pre-last sentence I just thought of bus instead of car and I changed in my head the word 'your' with the word 'the'.

Thank you guys for the tips and all I am sure those are going to help me.
Good night for now, it's 00:20 and I am going to make myself something to eat and a cup of coffee because sometimes I really want coffee and for some reason it happens at nights I got insomnia.

4VE4
 

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Welcome to the forum !
I'm sorry about the flu or whatever and hope it clears up quickly
It sounds as if your GP is doing a very full range of tests - make sure urine has been done too.
Most tests are significant only when taken along with other test results and symptoms. The thyroid tests can be abnormal for other reasons than thyroid problems. The CPK is a test for muscle problems in general not just heart attacks ( the heart being a muscle) but there are also other reasons for abnormal results.

I don't think a low SED rate has any significance, only if it is elevated. SED rate rises in response to immune system activity of any sort and isn't always elevated even in quite severe cases of lupus or flare ups. Having a negative ANA makes lupus less likely and certainly harder to get a diagnosis. RF doesn't play a big role in diagnosing lupus.


I hope you have some support of family and friends since you are so young, not having to go through all this on your own ?

Many symptoms of lupus resemble those of other diseases and there are other diseases rather like lupus. Where did the idea of you having lupus come from?

Best of luck - I hope you will soon get some answers and helpful treatment.


Bye for now
Clare
 

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Discussion Starter · #13 ·
Hello Clare.T :)

I have no friends and the only family I got is my mother and she is not really taking a big part in my health problems because it will probably give her a headache so I do stuff alone :)

I know RF has nothing to do with lupus but maybe it will answer some other questions such as the joint pain or so.

I got the idea about lupus from the blood tests I was sent to do, first I thought my doctor suspects an autoimmune disorder and then I did a little research where I found that of all the things that it could possibly be, the symptoms of lupus are closer than even scleroderma (which my doctor suspects) because it's been 2 months and my hands just don't look like in scleroderma rather just a few painful swollen finger joints, weird red (some big and some small) patches on them that are acompanied by dry itchi skin and Raynaud's phenomenon (which was diagnosed) and that is for the wrists but I can straighten my fingers, my whole wrist isn't red and swollen and the skin doesn't look shiney.

I know a lot about blood tests and in general about medicine and most of the time I can see what's going through the doctor's mind depending on which test he/she is sending me to do. My doctor says that I know too much and my mother says "from a lot of knowledge, a lot of problems", hmmm I am still trying to understand what does that mean :)

It's snowing today so nothing works so I can't get to my doctor again and can't do this RF and CPK tests again, hehe.
I feel much better, the only thing really bothering me is the breathing difficulty, I feel like something is litteraly stuck in my throat somewhere where the adam's apple is and is pushing on to the trachea or something, really annoying and really hard to breath, oh well :(

4VE4
 

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Discussion Starter · #14 ·
Remember me?

As I promissed, the results of the RF and CPK (at last):
RF in normal range.
CPK high.

Also remember I said I feel this weird thing in my throat that makes it difficult to swallow and breathe? Well at least one thing we found out - it's Globus Histericus so my GP gave me something to make me relax a bit. Funny eh? I am so nurvous and anxious all the time my body is actually showing symptoms of anxiety.

About the rhumatologist - still waiting for my turn, it's soon, 14 days left to wait and the closer this day comes I get more nervous.

Anyway, my next post would be after the rhumatologist.

4VE4.
 

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Hi 4VE4,

Was it your GP who said it was Globus Hystericus? Usually that is a diagnosis of exclusion, i.e. when all other things have been ruled out. It can occur after a bout of flu though and I know you just recently suffered from that, so maybe that was the cause. A more common cause by far is something called GERD, gastro eosophageal reflux disease so you should check that out to see if you have any symptoms of it.

Heres an article on Globus Hystericus:

http://www.nexiumresearch.com/globus_hystericus.html

CRP being high can indicate some kind of inflammation going on in your body, it's just not clear what it's from at this stage. One of those reasons is because of an infection, i.e. the acute phase of an infection......... inflammation is set up to try and conquer the infection. On the other hand it can be present in inflammatory arthritis patients. Often Lupies have a low level of CRP, but other inflammatory markers are high. It's individual though.

Good luck with the Rheumatologist.

love
Lily
 

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4VE4;497898 said:
Hello Clare.T :)

I have no friends and the only family I got is my mother and she is not really taking a big part in my health problems because it will probably give her a headache so I do stuff alone :)

I know RF has nothing to do with lupus but maybe it will answer some other questions such as the joint pain or so.

I got the idea about lupus from the blood tests I was sent to do, first I thought my doctor suspects an autoimmune disorder and then I did a little research where I found that of all the things that it could possibly be, the symptoms of lupus are closer than even scleroderma (which my doctor suspects) because it's been 2 months and my hands just don't look like in scleroderma rather just a few painful swollen finger joints, weird red (some big and some small) patches on them that are acompanied by dry itchi skin and Raynaud's phenomenon (which was diagnosed) and that is for the wrists but I can straighten my fingers, my whole wrist isn't red and swollen and the skin doesn't look shiney.

I know a lot about blood tests and in general about medicine and most of the time I can see what's going through the doctor's mind depending on which test he/she is sending me to do. My doctor says that I know too much and my mother says "from a lot of knowledge, a lot of problems", hmmm I am still trying to understand what does that mean :)

It's snowing today so nothing works so I can't get to my doctor again and can't do this RF and CPK tests again, hehe.
I feel much better, the only thing really bothering me is the breathing difficulty, I feel like something is litteraly stuck in my throat somewhere where the adam's apple is and is pushing on to the trachea or something, really annoying and really hard to breath, oh well :(

4VE4
I would check and have your IGe levels checked as well. there is a rare condition called Hereditary Chronic angioedema. It can cause swelling and soreness in joints that it is affecting. It is a systemic condition but not autoimmune. If your Ige levels are high that might be a culprit.

I suffer from that but i have a positive ANA as well and though the doctors don't seem to think I have an autoimmune disease I keep having to have my ANA tested every four to six months. Same reading everytime.

With angioedmea, if it is that it is an histimaine reaction and basically your hands and feet can swell but the serious part is that fact your mouth and throat can as well. The tingling and numbness can be caused by the swelling in the hands and causes temporary carpal tunnel like symptoms...

Other symptoms can be fatigue, soreness in joints, I some times experience pain across my shoulders and middle of my back from the swelling in my muscles that travels up my neck and head,which cause sever headaches.
Stomache pain and nausea. If you experience that first then the on set of any of the ther symptoms, it could be this....
I too have Raynuad's

I have found the only thing that helps is large amounts of antihistamines, like Benadryl. Sometimes I have to go on steroids do to a prolonged flare.


Now i am not a doctor, but check out this at least...

http://apma-nc.com/PatientEducation/angioedema.htm
 
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